Lovingheart

On May 23rd, the week before the chemo that weakened Marlon enough to put him in the hospital, the dog, the boy, and I drove to Montreal. (I am aware of the use of the word 'go' when writing. In German, the verb 'to go' means walking. You don't 'go' in a car.) Before we left, as I was packing up the car, I noticed a fair sized spider web between the driver's side view mirror and the car. I left it alone, figuring the wind would blow it off. It was so nice to see Linsy and Moira and spend time with them. I have missed having Linsy around. It was neat that, when we got there, Olivia, Jamey, and Roka, their dog, were there. They live 15 minutes away from us but were there visiting their son. Mina was definitely happy to see Roka (and all the others too).   Mina got used to walking on sidewalks and being in the city. Other people and dogs, not so much. Moira has given me a belt with a dog lead on it for hands-free walking. It worked but was even bett...

Marlon has had four dental appointments. Two the first week, then the following week, we went and hung out at my niece's cottage for a few days. Nice to hang out with family, celebrate Aneesa's fifth birthday, and get away. At this point, Marlon said, 'This is the most fun I've had in forever' The week after, at Marlon's third appointment, the pain of working on a deep cavity was too much even with extra freezing. The dentist said the cavity was at the nerve and an extraction would be best. Either that or a root canal and there is crowding in his mouth. At that, Marlon was quite upset. Because there are so many factors at play, and still so much work to be done, the dentist recommends dental surgery at sick kids. Just as that was decided the power went out and after waiting a while, they put a temporary filling on the two teeth that had been drilled. So Marlon's fourth appointment included re-filling the tooth that was ok and pictures of s...

Decision was made that Marlon was to go check blood counts on Monday.  We drove down to Hamilton together, quick finger poke, and then leave again.  A couple of times, we drove around the parking garage for almost a half-hour looking for a spot, but Monday was smooth.  Busy place. Blood counts are good so dental work begins.  Marlon's doctor was impressed with the dentist when she spoke with him last week.  In support, I sit next to him in the dentist's room and hope my own anxiety, discomfort, and fear don't affect him. Halfway through the drilling of four teeth which was quite intense, they took a little break to check in with Marlon and see if he was up to continue.  He agreed to do more but said he was most concerned about the tastes of the filling material.  With the pain and discomfort of the first part, one would think that would be the least of his worries but he is very sensitive to taste and flavour.  As it turned out he didn't gag or re...

Back at hospital for monthly injected chemo including LP.  After having been on half doses at home, his blood counts are good.  Amazing really, they haven't been this good in who knows how long.  Unfortunately, it won't last as they will up his doses at home. Marlon desperately needs dental work done.  It is quite sad to see that every tooth needs some work done and some cavities are big and deep.  But it is hard to do the work while undergoing chemo.  After yesterday's dentist appointment we have renewed the discussion to see if it is possible to do the work now or if we have to wait until the new year when he is hopefully finished with treatment.  Poor guy, he has been having a rough go of it. On the upside, last week he went on a Toronto day trip with friends.  At first, he wasn't sure about participating as he didn't think he could keep up.  Once he decided to give it a try, he was able to and enjoyed his day.  He was tired and a lit...

Happy to say Marlon is much better.  Tuesday again, and we were back at the hospital to get his blood counts checked and all is well. Before his last LP (lumbar puncture) in April, Marlon was dreading it, and also curious.  After the previous LP, when he reacted so poorly, he was scared to have another but curious to have a coke, a drink he hadn't had before.  Apparently, the caffeine in the pop can help with the headache and it did.  We were both relieved that he was ok after the treatment.  He still felt his back and head but not the screaming kind of pain from before.  Next LP is June 28th and we are prepared with a different kind of caffeinated pop in the hopes it will work again.  While he has chemo hospital visits every month on top of the chemo pills he takes at home, we are grateful that the LP procedures are down to every three months. The biggest issue of late is Charley horses.  Monday night he was up every two hours crying with the pai...

Yesterday, Marlon had a transfusion as his hemoglobin was low.  As far as the pain and rash go, the doctor thought it may be an autoimmune response.  Some big name but basically the blood vessels get inflamed.  Sounds about right.  Now except for a couple of small bruises and slight redness his legs are better. He has been getting headaches but it is likely just a reaction to everything he has been through the past couple of days. And we went home today.  Yay!  His neutrophils are quite low as are his platelets but those are expected. Getting checked into emergency early Saturday morning was a slow process.  Very slow.  There were about 6 people in the small check-in office, staring at the computer screen, making occasional moves, pointing at the screen, shrugging, and looking confused.  I believe we were one of the first patents to be checked-in under the new computer system that has been two years in the making.  Since then, there have...

Overall, Marlon is much better.  While he had an elevated temperature yesterday for a while, he has had no more fevers. Since his diagnosis, Marlon is more worried about his health.  Worried the cancer will come back.  A couple of times lately, his legs hurt.  The pain is such that even gentle touch makes it worse.  One day while I was at work, he messaged me to come home because he was scared.  His dad was there for him and I did not leave work.  I trust he is healed and hope he never has to deal with cancer again.  While we may wish he did not have to continue with chemo, I tell him he is safe from the cancer. Last night, he did have an episode of very sore legs and knees.  It hurt to walk, and the pressure of rolling up his pants legs had him crying out in pain.  Along with the pain he had a blotchy, bright red rash.  No one had any idea what that was about and the pain has eased up but some rash is still there with one spot look...

I feel like I have some catching up to do but I will start with this week. Tuesday, Marlon had his monthly chemo injection at the hospital to add to the daily chemo pills he still takes. He was commenting that it feels it is hitting him harder every month. By Thursday night, he was crying with leg pain and a bad headache. Friday, he didn't eat anything and had a raised temperature but not quite a fever. He woke in the night and was quite warm and when I checked his temperature was 39.9. Darn, a trip to the hospital. By the time we got to the hospital, his temperature was down to 37.2 and then a bit later, 37, so I thought that for sure, they would check his blood and we would go home. I was hoping to be back home to go to work at 4. Then we were told, his platelets had dropped from 64 on Tuesday to 9 so he would need platelets. His neutrophils had been 1.1 on Tuesday and today they are 0.2. Without any reserves to fight infection which is what the fever indicates, he is ge...

I have a bad habit of running into work in the last minute.  Actually these days (ever since having kids), I seem to be perpetually late. Today, I left the house in good time and was happy to think I wouldn't be late.  Paco was outside working on the car and Mina was hanging out.  We joked about her following me.  I laughed and inhaled something.  I was biking down the road, coughing, trying to clear my breathing.  I glance behind me and do a double-take as I see a black figure running down the road behind me.  Yikes, Mina did follow me.  I phoned Paco, he drove down to pick her up (almost a kilometer from the house by the time I noticed her), I pedaled hard, and clocked in late for work. I keep picturing Mina running down Churchill.  A pick-up truck even stopped to ask if we needed help as I stood on the side of the road, holding onto her, waiting for her ride back home.  Phew! Overall, she has come a long way in terms of her health and...

Compared to the last time I wrote, Marlon is much better. He was at his worst on February 15th when he had a hospital check-in.  After finger poke, we got a wheelchair to get him to the ward.  He had nothing left.  Bad headache, sore back, nausea, no energy.  When there, they gave him water and blood.  His counts were low, not dangerously so, but low enough.  He did feel better afterward.  His back was still quite sore, leftover from the LP on the 8th. Since that time, he has been slowly getting better.  Still a lot of nausea and no appetite, which had the hospital giving him a hard time because of weight loss.  He has also had several lectures about drinking enough.  They expect as many as 10 cups a day.  Getting that much liquid into him, gave Marlon anxiety and a lot of stress.  We have found that a goal of seven cups is doable, comfortable, and often exceeded. On his 12th birthday, February 18th, Marlon said he was feeling ...

Has it really been a month since I have written?!  I have done a lot of writing in my head just never completing that extra step. It has not been the best of months.  Marlon's energy has been low, he's had a lot of nausea, and just not feeling 100%.  The hospital delayed his lumbar puncture which was originally scheduled for January. He had a week of headaches so when we got to the hospital last Tuesday, the 8th, I asked the doctor if it could be delayed again.  She checked him over, decided he was fine, and they would go ahead. Driving home from the hospital, Marlon was somewhat of a zombie.  When we got home, he needed help to get inside and then his headache went from bad to unbearable.  He was crying, saying it was the worst pain he's ever experienced.  It was a stressful evening and eventually the headache settled into a migraine.  He couldn't take any pills, food, and only drank a few sips but all he had eaten during the day came up anyway. ...

On Christmas Day, we were stacking wood on the steps.  My legs and back were sore and I was slow-moving.  I rested and felt better.  Two weeks later, again we were moving wood to the steps and I exclaimed to Paco how happy I was that my body was moving much more freely.  A minute later, I picked up a piece of wood, felt a twinge, and thought I'd better be careful.  But it was too late and I was hobbling and hurting.  Several days later and I am still walking and moving with care and pain.  Argh. Marlon and I were at the hospital Monday, not for treatment but to get his counts checked (fine) and refill prescriptions.  We sat and waited for the results of blood counts and after sitting for a while I could barely move, I definitely couldn't stand up straight.  After waiting one hour for results, we waited another two for his medication.  During that time, Marlon stayed in the car listening to podcasts while I paced slowly so as not to seize...

Having been off work for a couple of weeks for a variety of reasons, I slow down, maybe even sit or lie down more.  Last night, lying on the floor with the dog partially biting me, partially resting with me, I felt at peace.  And that peace is often not there when I am working.  I get caught up in one thing or another.  An injustice or even just a comparison and we can always come up short if we compare to others. I just finished a book called David and Goliath which speaks much of the underdog, of those who have withstood hardship to go on to do great things.  This hardship is often experiencing the death of a loved one or some sort of religious strife. And I think of our beliefs of right and wrong and how we hurt other people.  That baffles me and yet I know I have done it.  It can be as small as an insensitive statement or judging another.  And again I make the decision to strive to be understanding of differences and even hold my mouth in chec...

Happy New Year!! New year 2021 we were at the hospital so I count us lucky we were able to wake in our own beds this morning. I was marveling the other day that the dog is more scared of vacuum cleaners than she is of chainsaws. Maybe I don't vacuum enough. We have had a quiet week here.   Josephine has been off work as well and the dogs have benefited from several good walks with both their moms.  Stella is very attached to Josephine but she accepts me if her primary person isn't there. Overall Marlon has been well but he has had times each day that he has been feeling poorly.  Variety. Please don't take my blanket away from me.  I did take it away to wash it and she was happy to have it returned.

Merry Christmas! Christmas eve, Josephine came with us on our walk.  Stella and Mina bounded along.  I looked behind me and saw a big blob of brown saying hi to Mina.  Turns out it was a dog walking nearby with his owner, a brown lab named Cooper.  At first, Mina was happy to say hi but Stella was fearful.  They walked with us and Stella and Cooper barked loudly and played rough with Stella bearing her teeth but eventually enjoying the play.  Mina was not ok with it.  She didn't want to walk, kept falling behind, with both Cooper's owner and myself taking turns carrying the pup.  I am wondering if maybe she meets Cooper on her own so she can see he is a nice dog.  I am guessing she saw and felt Stella's original fear. We had another tower of presents this year.  The stacking was courtesy of Paco.  Lots of wrapping and big boxes but not really much stuff. I did get a video of Mina opening her present. https://youtu.be/HCmLVL3rUM4 It ...

It surprises me how fast it is to get out of the routine of writing regularly.  And then how much effort it takes to write again! I used to hold onto the idea that it takes 21 days to create a positive habit, to have something be more routine.  Maybe so, but it takes so much less to stop. At Marlon's last hospital visit, I finally relented and decided we would get in-home physio for him.  I have been against the idea, not because I don't want anyone in our home, but mostly because it seems more of a hassle and an expense to have someone come here rather than us go into a physio office.  For Marlon, in his situation, and with the referral, it is cheaper to have it in-home. Many phone calls later and we have someone set to come here.  We really need to see improvement in his strength and mobility.  Marlon is pretty good at wearing the brace but we aren't sure it is really helping much. After writing this, I watch Mina slowly stand up and hobble over to her fo...

Last Thursday, Marlon had an off day which he still gets ever so often so he didn't go to outdoor school.  He felt nauseous, weak, and low energy. As it turned out, he spent most of Saturday feeling miserable and unable to keep anything down.  Add to that a big wind storm, a power outage, and he was not a happy camper. I was at work, he felt bad, it was dark, and he messaged me to leave work early.  I did not but shortly thereafter the power came back, he was able to have computer time, and started to feel better again. Marlon had a hospital visit on Tuesday.  I had been asked to bring all his medication along and I was asked a couple of times why I would still have the Prednisone and I said it was from the time he didn't take it because of his fractured wrist.  After work that night, when I went to give him his pills, I realized the date on the Prednisone container was September 2020.  Duh!  When I went to give other nighttime pills, I couldn't find t...

Last Monday, we made a last-minute decision to go for a walk with friends.  Three siblings and their mom.  Mina was happy to trot along and loves the extra attention.  We even enjoyed having chickadees land on our hands as they picked sunflower seeds off them.  Afterward, we left Mina with other friends in Guelph while Marlon and I went to the mall.  He has decided he wants a book on Greek mythology and, knowing how picky he is, I thought we'd better review our options.  They only had one big book but after reading it for a while, Marlon didn't have too many complaints and felt he was able to learn from it.  It will be a Christmas present.  Mina was ok being left with friends (even though she hasn't met them before) but was happy we came back to get her. Tuesday was a double hospital day.  First hospital was to get Marlon's brace and second was to check Marlon's blood counts.  I worked in the evening and by the time we got back, I had a ...

On Thursday, we dropped Marlon off at outdoor school and Mina likes that time.  Lots of kids to give her attention and play chase with her.  When it was time to go, she didn't want to leave but that afternoon we went for a walk with Stella and she liked that too. Stella is fast and strong and Mina can't keep up but since then the two of them have had a few walks together and are creating a relationship.  Nice to see. Hard to see but in this picture, Mina has a big snowball. Marlon sometimes complains when he does too much but little by little he can do more and more.  He gets these waves of exhaustion but recovers quickly.

Marlon needed Wednesday to recover from Tuesday's hospital visit but since then he has been pretty good.  He hasn't thrown up since Tuesday morning and is relieved to not be dealing with constant nausea. We went to the Santa Claus parade on Saturday and while Mina was just fine, I think she would have been just as happy to not be there.  I am happy that she likes people.  She picked a few favourites at the parade and if she felt nervous she would stand closer to them. Sunday, I took her for a longer walk than we usually do and a little while later we joined Josephine and Stella for another walk.  I was happy Marlon came along and we went a route that he hasn't done since the spring when he needed help to get back.  It is nice to see the two dogs getting more comfortable around each other and playing. Today, we went to my sister's place and walked with her and her dog.  Mina tries to keep up with the older dogs and while she is stronger and faster, she can't...